Pupils and their families are facing a “devastating” wait of up to five years for autism assessments.

The long delays mean pupils are at risk of missing out on vital support at school, according to a national charity.

Across the country, children are thought to be waiting, on average, more than three and a half years for a diagnosis after first raising concerns with professionals.

But in one part of the country, it has emerged that the wait for an assessment is up to five years.

Waiting times have grown in Calderdale, West Yorkshire, after the number of requests for assessments quadrupled, a local government document reveals.

Calderdale Council and the district’s clinical commissioning group (CCG) are now carrying out a review into autism services to identify improvements.

The Calderdale CCG has apologised for the length of the waiting times and said it has not been able to meet the increased demand. 

It said it had increased funding which it hoped would reduce the waiting times.

Judy Shaw, head of Tuel Lane Infant School, in Sowerby Bridge, has been told that one of her pupils, referred in 2016 when she was in Reception year, will have to wait until 2020 before being assessed, and that a pupil entering the system might not be seen until 2024.

She said:  “School leaders want their schools to be fully inclusive, ensuring all pupils have access to appropriate provision; that is their entitlement. But we must have swift access to expert advice. We need tangible and practical support from supporting professionals if we are to ensure that all children thrive and achieve.

“We know that early and swift intervention when special or additional needs are identified is crucial. How can we do this under these circumstances? It is unacceptable.”

The Calderdale Health and Wellbeing Board’s annual report confirms that in some cases school-age children are waiting up to five years for an assessment.

It adds: “This has led to parents and carers becoming very concerned about obtaining a timely diagnosis and access to support.” 

Pre-school children in Calderdale are waiting for up to 12 months, according to the report.

‘Strain on families’

The report says the increase in requests for autism assessments was occurring “in the context of financial challenges and a lack of long-term resource”.

Lynsey Mitchell, headteacher of Sowerby Village Primary School, said the situation was difficult for families.

“We have two pupils on the ASD waiting list and both have been for a while,” she said. “The main difficulty we’ve faced, apart from not having the ASD team on hand to support class-based staff, has been around supporting families and trying to answer their questions to help them support their child at home. 

“Parents are concerned about how they will explain to their child that they might have ASD if they begin to identify and question differences between themselves and their peers.

“Its a really tough time for parents when they receive this news and there seems to be little help out there for them because they’re waiting on a diagnosis that health teams locally don’t have capacity to provide.”

The National Autistic Society said the wait was unacceptable and that volunteers from its Calderdale branch were looking to support families affected.

The NAS’ head of policy, Sarah Lambert, said that an autism diagnosis can be life-changing as it can explain how someone has always felt different and help to unlock crucial advice and support.

“Yet people are having to wait far too long in many areas, including in Calderdale, where the wait for school-age children can sometimes be up to four of five years. This is unacceptable,” she added.

“Such long waits can be devastating and add to the strain on already vulnerable autistic people and their families.” 

The NAS said that waiting times for autism are not regularly collected and monitored at a national level, which means there is not an accurate picture about how long children and adults are waiting nationally.

However, it said that research suggests that, on average, children wait over three and a half years and adults around two years for a diagnosis after first raising concerns with professionals.

Calderdale Council’s director for adults and children’s services, Stuart Smith, said: “The assessment service for autism spectrum disorders is commissioned by Calderdale Clinical Commissioning Group and we have been working closely with them to drive improvements in the range of mental health services for children.

“In many areas, these services are improving rapidly and there are services available from the council for children whilst they are awaiting assessment, but there is still a way to go to improve waiting times for autism assessments. We will continue to work with the CCG to support improvements to this service.”

A CCG spokesman said: “Over the last few years the number of GP referrals to child and adolescent mental health service (CAMHS) Autistic Spectrum Disorders (ASD) has increased significantly and despite efforts the service we commissioned has not been able to meet this demand.

“We’re sorry, and we recognise that this isn’t what people need. We want to reassure you that we’re doing everything we can to reduce waiting lists as quickly as possible. We understand the pressure and anxiety that this uncertainty can have on children and young people and their families.

“We believe that families shouldn’t need to wait for a formal diagnosis before accessing specialist support services and so we have written to all the families on our waiting list with an information pack which details all the services that they can access without delay. We have also appointed a dedicated practitioner to support those waiting.

“Working hand in hand with our partners, the CCG has also agreed additional funding which we hope will help quickly reduce waiting times.

“Looking to the future, the independent review of services we commissioned together with Calderdale Council has made a number of recommendations where improvements can be made.”